Post-ICU syndrome signals need for better transition between life-saving care and return to life

Nadine Foster remembers only two things from the five weeks she spent in the intensive care unit: a woman’s voice telling her she was in hospital in Edmonton, and hallucinating that her brother-in-law was playing a practical joke by dressing up like a doctor.

“They had to do a lot of pretty awful things to me, especially in the early days, so in some ways I’m quite glad I couldn’t remember,” Foster says, whose ICU stay was caused by a medication error. She’d had a central line catheter put in. Doctors drilled a hole in her head to relieve brain swelling. They cut open her belly to give swelling organs room, an incision that remained open for 11 days.

She came close to death so often, her survival was viewed as a miracle.

“Not having any memory of it is sometimes a little troubling. It’s like it was the most significant thing that happened to me, but I didn’t feel it. I’ve got the scars from the surgeries. I’ve got the long-term health complications. But it’s like it happened to my family, to everyone else.”

Amnesia wasn’t the only thing Foster took home from the hospital. She had a surgically-created opening to help expel bodily waste. Muscle loss had robbed her of the ability to walk. She couldn’t concentrate long enough to read. She would sleep up to 16 hours a day, yet still feel exhausted.

“I was shocked,” says Foster, a forensic health nurse who worked with troubled youth. “I had no idea, even as a nurse, that I would suffer so much afterward and that it’s such a long, slow climb back to normal life.”

Worse, because of the way many ICU survivors are discharged from hospital – spending time in a medical ward before moving on to a rehab hospital, long-term care facility or home – many feel abandoned and unsupported in their recovery.

“For some patients who come to the ICU, they never get back to where they were before the ICU,” says Orla Smith, a critical care nurse at St. Michael’s hospital who has experience managing the unit and its research portfolio.

‘Hidden consequences’ of an ICU stay

ICUs were first designed and developed in Denmark in the 1950s to manage polio patients. Over time, they’ve evolved to include more complex care and remain the place for the sickest, most complicated patients.

The unit’s focus is on saving a life – not necessarily about the quality of life once that life is saved. That’s slowly changing, says Christopher Grant, a rehabilitation physician who runs a post-ICU clinic at the Foothills Medical Centre in Calgary.

“Now there’s a movement – I hope – to look at not only can we save you, but can we give you your physical and mental function back?”

Studies show that there are a range of reactions to a stay in the ICU, from the physical wastingthat patients experience when they’re prone and immobilized to the emotional problems that can come with surviving a near-death experience to a kind of mental fogginess that seems to be associated with the sedation used in the ICU. Collectively, these physical, cognitive and psychiatric symptoms are known as post-ICU syndrome.

“The consequences are hidden from us, partly because ICUs are generally in a large hospital and patients usually don’t discharge home from the ICU,” Grant says. “The way our siloed health system has sort of evolved is that intensivists don’t really have visibility into how people do once they go home.”

Poor quality of life

In the late 1990s, Margaret Herridge, a respirologist and scientist at the Toronto General Hospital Research Institute, set up a study looking at the recovery of people who survived severe lung dysfunction. She asked theexpected questions about their lung capacity, looking at how much air they could blow and whether they still used oxygen tanks. But she also asked about rehab measures: whether patients had gone back to work, how far they could walk in six minutes, how they would describe their quality of life.

“The patients were just ravaged, actually. They were incredibly weak, they had mood disorders, issues with cognition, a whole host of medical problems,” Herridge says. Half had not been able to return to work. Many still got breathless walking for a mere six minutes. The study’s subjects self-reported that their quality of life – factoring in pain, mental health and social functioning, among others – was low.

“I was shocked by it. Patients and families were telling me: ‘There’s no help for us.’” Their family doctors didn’t understand what they’d been through; community care couldn’t handle the complexity of their wound care.

“I could just see that this was a very vulnerable group of people with massive unmet needs and the system was failing them, having invested so much in their initial care.”

Transitions in care are particularly difficult. Teddy Zittell spent seven weeks in the ICU with failing lungs, then a week on a regular medical ward, followed by six weeks in a rehabilitation hospital.

“Being transferred to the medical floor was a big transition,” his wife, Bari, says. “It was really, really challenging.”

To manage the complexity of interventions in the ICU, there is often one nurse for every patient, or one nurse for two patients. Nurses on a medical ward, by contrast, might care for five or six patients.

“We always had someone from the family there quite early in the morning. When he went onto the floor, he couldn’t even feed himself but they would just put a tray down and walk out,” Bari says. “It sort of went from 100 to zero in 20 minutes. There’s no in between. There’s no step down.”

Little research on effective interventions

What might be just as bad or worse is the transition from hospital to home.

“My discharge plan was a one-liner,” Foster says. “Keeping in mind that I’d had multi-organ failure, sepsis, failing liver, failing kidneys, a bowel perforation. It basically said follow up with your family doctor and go to the emergency department for anything else. People go home with a more complicated care plan after giving birth, which is completely routine.”

Foster was assured that her blood levels – indicators of the recovery of her vital organs – would stabilize within a few months of her discharge from hospital. Her blood levels rebalanced within two months. But it took a year to feel physically normal again, two years for her cognitive state to return to normal.

“In my head, I’m thinking, so I should be feeling good right about now and I wasn’t. It was a real disconnect between what my blood levels were telling me and what my body was actually doing,” she says.

Evidence is only beginning to emerge on the predictors of post-ICU syndrome, but there does seem to be a link to the length of ICU stay, the severity of the illness, older age and any pre-existing conditions or cognitive impairment.

To prevent some of the symptoms of post-ICU syndrome, more focus is being placed on helping ICU patients move, either by moving their limbs for them or by using a sling to get them upright in a chair or by hooking them up to machines and getting them up and walking. (Incredibly, some patients with minimal lung function can be put on portable ventilator machines and helped to walk the ICU floor.)

“As the science evolves, we can keep sicker and sicker people alive, but what we can also do now is keep you alive and move your joints. We can keep you alive and give you crosswords to keep your brain engaged,” Grant says.

“The fixes usually aren’t fancy,” he adds. “They’re usually education, exercise, informing the family doc of what happened.”

Research is still emerging on how best to support ICU survivors. One UK study found no difference in outcomes with a post-ICU rehab program, findings confirmed by a similar Scottish study. However, experts point out that the one-size-fits all approach to the study’s interventions – sometimes no more than a check-in from a critical care nurse – likely led to those findings.

“The challenge really is to figure out how to match the patient or family needs with the right pathway,” Smith says. “There are lots of people looking at this, but unfortunately, no one has given us the holy grail of what rehab should look like.”

Long-term impacts of ICU-related delirium

Delirium, a disturbed state of consciousness and awareness, is common in the ICU, affecting up to 80 percent of ventilated patients. The cause, or causes, of delirium are unknown. It may be due to the underlying illness, the body’s inflammatory response to the illness, lack of sleep, pain, anxiety, or medications used in the ICU.

It can be a tough problem to resolve, as some of the medications used in the ICU can cause or worsen delirium. It is also very distressing for family members as some patients are agitated and aggressive, and actions usually associated with comfort, such as talking or touching, can make symptoms worse.

Worryingly, while it used to be thought of as a transient or sporadic condition, longitudinal studies are showing it can have long-term consequences.

Recent studies have shown that patients over 65 years old with delirium in the ICU have long-term impairment in their cognition. But it’s not just older patients. Many patients followed in the recovery clinics show signs of anxiety, depression, memory loss, fatigue (brain fog), and other non-physical effects. There are also consequences for the family of survivors. Families also often don’t realize the hidden consequences, such as delirium, and are frustrated that recovery isn’t quicker.

The increasing attention to long-term recovery is important.

Many studies from neonatal intensive care units have shown that babies born and requiring ICU care have long-term health consequences that require careful follow-up. Given the expense of caring for adult ICU patients in the hospital, investment in their long-term follow-up would seem to make sense too. But there is currently little coordination of care post ICU in most hospitals and health regions in Canada.

Recent work in Canada, led by Herridge and others, will introduce a coordinated strategy for follow-up of ICU patients. Such an approach will not only be novel in Canada, but across North America.

The program, known as RECOVER, is awaiting funding to scale up in Ontario, Quebec and Alberta. It’s designed to assign a navigator to any patient mechanically ventilated in the ICU for four days or more. The navigator would help assure continuity of care, but also help educate and support patients and families and connect them with mental health resources. Once a patient is stabilized and ready to leave the ICU, they would be placed into an accelerated and comprehensive care, rehabilitation and nutrition program, then go into a community-based recovery clinic and followed for one year.

“It’s really kind of a combination of education and comprehensive medical and psychiatric assistance. It can’t be just a check-in,” Herridge says.“People really need active management. I’ve learned so much just from listening to people. That’s why our intervention looks the way it does – it’s totally patient- and family-driven.”

Foster, who now acts as a patient advisor, recommends that health systems also build resources like ICUsteps, a patient-led online support group. Foster found it beneficial.“You hear other people saying this is what I went through, this is what helped, you’re not crazy. There is validation that you’re not alone, that this happened to a lot of us and that you can get through it.”

Related Faces of Health Care

“It’s hard to go up to families of patients in the ICU who are going to die soon and say, ‘What can we do for you and your loved one?’”

I recall this being talked about, as something to investigate, over 30 years ago. I am so glad it is moving ahead. Having worked ICU for almost my entire nursing career I understand the importance. However, it wasn’t until a recent hospital stay (not in ICU, but receiving a lot of pain medication), that I have an even better understanding of what ICU patients might go through following their discharge from the ICU, & then home.
I’d have loved to have had the opportunity to participate in such a program as an ICU nurse. So much to learn, & so much help to be provided.

As a former ICU sepsis patient, now almost six years out, I would welcome a chance to have access to a support group. Being fortunate in my family and family doctor support I have managed to recover some quality of life but I still feel the need to talk to fellow survivors. They are the only people who can really understand.

As someone who has also suffered a life-threatening illness, this article really hits the nail on the head. As you note in the experience of Nadine Foster, I too was utterly exhausted for 6-8 weeks post-ICU discharge and it was hard to get back into real life. I also had a newborn baby to care for. If you’re ever looking for a patient to communicate their experience, I would be more than happy to speak with all of you!

As I read this article tonight, I am currently laying in ICU at Kingston General Hospital. I have spent almost 2 full years in and out of the ICU here at KGH. I have lived through some crazy things over the past 6 ½ years and am thankful that I always have to return to the ICU unit at KGH. A lot of the ICU attendings have been taking care of me since my accident on May 10, 2011 in Lima Peru. The teams are great at listening to what I have to say as they know, I know my body well. If you would like to know more about my story, you can check out my Faces of Healthcare articles here at Healthy Debate.http://healthydebate.ca/faces-health-care/drew

Astounding changes since my time in ICU in 1972 after a near fatal car accident! I was discharged home after a month with zero supports beyond weekly rehab visits I could barely attend. I couldn’t get in and out of a chair or bed without help, hardly feed myself and was alone all day while my husband worked. No one told me about brain fog so I thought I had brain damage because I couldn’t make sense of what I read for around 3 years. It was impossible for me to finish Bleak House (apt name!) and resume my university course. And yet I was lucky long term. I have informally shared with people going through similar experiences so they don’t feel alone or crazy.

These changes can dramatically alter people’s lives by removing the feeling of isolation and fear of being crazy as well as providing practical supports. Such a great step.

Is this the right type of space to seek ICU/Sepsis survivors in Calgary who may be interested in establishing a support group? It has been 6 years since my sepsis event but recovery was delayed due to further surgery over the following 2 years. The AHS Living Well program assisted physical recovery to a certain point but the extended effects of post ICU have left me feeling the need of mutual support from those who have also experienced this monumental change to one’s life.

Doreen, you have asked a really good question. I sense that exchanging ideas through this website may be somewhat helpful – yet, am wondering if there would be value in asking those leading our Alberta Health Services Critical Care Strategic Clinical Network about this. What do you think?

This document is provided under the terms of a CreativeCommons Attribution Non-commercial Share Alike license. The terms of the license are available at: http://creativecommons.org/licenses/by-nc-sa/3.0/. Attributions are to be made to HealthyDebate.ca, a project under the direction of Dr. Andreas Laupacis, at the Keenan Research Centre, Li Ka Shing Knowledge Institute of St. Michael’s Hospital.